Random Seasons

I had that dream again, only it wasn’t terrifying.   My leg muscles were so weak I could barely walk. This time, I was trying to walk up a hill on a street to do something with friends and my legs were so weak and trembling I collapsed to rest every few steps. I kept pushing as hard as I could because I was embarrassed and I wanted to participate. I imagined my friends remembering the old me, who would have jogged spiritedly up the hill, offering a small child a ride on my back. Now the small child was bored and complaining that I was going to make us late.

I had dreams like this when I was first sick, but the leg weakness – which sometimes wouldn’t allow me to even stand  in those dreams – would put me in danger. There would be a threat, something I needed to run from or stand and fight. I was helpless, and the fatigue was like a crushing weight that pinned me and made me utterly useless. I remember many dreams of struggling to use my less weak arms to pull me upright on my spaghetti-like legs so I had a chance, but it never worked.

So – improvement, eh? I’ve gone from being in mortal danger to being a frustrating embarrassment. There’s a lot of change to reflect on in the 4 years and 5 months since I first was laid low. I am clearly less sick, happier, more functional. I‘ve structured a decent life around working less, resting at least a few hours a day, sleeping 10 hours at night, avoiding loud overwhelming places,  exercising little to none, and planning very few evening activities.  My friends and family are virtually 100% accepting and kind about my limitations, and I am at maybe 80% acceptance. The embarrassment I felt in the dream was all mine, no one in my life seems to express frequent frustration or disappointment about me, which is a tremendous gift.

Maybe the dream came because I’ve had a week of lousy sleep which nearly always corresponds with an increase in symptoms. For about a month prior, I was feeling encouragingly well, even able to sustain longer stretches of exercise and more evening social and work events. Some days I would wake up dizzy -  always a warning sign in the past – but my symptoms would just melt away as the day went on instead of reaching a crescendo mid-day, sending me to the couch. It was starting to feel like spring after a long winter.

It is more understandable when I tell people – my sleep has been crappy so I’m not feeling well – instead of the more accurate version – my disease has been jacking up my nervous system, disrupting my sleep and causing more fatigue, dizziness, sensitivity to light, poor concentration, poor stamina, etc.  Loss of sleep is both a symptom of my illness having a relapse and a contributing factor to my other symptoms. And now, I just want to hibernate, like a bear. 

That was a short spring.